Grandmother struggles with 1.5 million won monthly costs for Ju-yeon's care
A grandmother struggling with mounting medical expenses provides constant care for her 13-year-old granddaughter, Ju-yeon, who lives with a rare microdeletion syndrome.
Chae-gyeong faces a heavy financial burden as she manages 1.5 million won in monthly rehabilitation costs for 13-year-old Ju-yeon, who suffers from microdeletion syndrome. The grandmother, who recently had to quit her job due to health issues, provides constant care to manage Ju-yeon's developmental disabilities and self-harming behavior.
Ju-yeon is a child who smiles whenever she hears her grandmother sing "Twinkle Twinkle Little Star." If her grandmother is not in sight, she quickly bursts into tears and runs to embrace her. While Ju-yeon's behavior resembles that of a three or four-year-old, she is already 13 years old and approaching her elementary school graduation.
The 24-hour life of the grandmother, who has raised Ju-yeon since her 17th day of life, is centered around Ju-yeon, who is inseparable from her. Born with a rare condition called microdeletion syndrome, Ju-yeon has become mobile enough to perform basic daily activities through long-term treatment and rehabilitation training. However, due to developmental disabilities, she is still unable to speak or express herself. Most significantly, Ju-yeon engages in self-harming behavior whenever her grandmother takes her eyes off her for even a moment.
Despite numerous attempts to stop the behavior of hitting her head until it bleeds, the frequency of these incidents has not decreased, even though the intensity has lessened. All the grandmother can do is place a protective helmet on Ju-yeon's head to prevent injury and soothe her until she calms down.
Going out is also difficult due to Ju-yeon's unpredictable behavior, such as sitting on the ground and screaming when she does not want to move. Nevertheless, thinking of the day Ju-yeon will eventually have to face the world alone, the grandmother always holds her hand and steps outside to help her become more accustomed to the world beyond the home.
The places the grandmother visits every day with Ju-yeon's hand in hers are hospitals and welfare centers. Ju-yeon receives rehabilitation treatment at different hospitals and welfare centers depending on the day of the week. She undergoes speech therapy to help her start speaking, psychological therapy to reduce self-harming behavior, and movement therapy to loosen her still-inflexible muscles. The cost for rehabilitation treatment alone is approximately 1.5 million won per month. While the accumulating medical expenses are a heavy burden for the grandmother, who recently had to quit her job due to health issues, she cannot give up treatment as she watches Ju-yeon gradually improve.
Chae-gyeong, the grandmother, has only one wish: for Ju-yeon to improve enough to be able to cook for herself when she is eventually left alone in the distant future. Until then, her goal is to endure so that she does not give up on Ju-yeon's treatment. Whether Chae-gyeong's earnest wish can be fulfilled remains to be seen. The story of the grandmother and Ju-yeon, for whom each is the entire world, can be seen on October 26 on .
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Covers K-pop for SPECIALTIMES GLOBAL, and also writes Culture and K-Variety stories.
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